update on todays app and thank you!

[noodle31]

hi all

thank you for your good luck messages.

well we got there and in the meeting was..

2 dr's
ward sister
care manager
OT trainee

mum was a bit overwhelmed. luckily i have experience of these meetings due to work (mental health support worker) so i put on my "proffesional cloak" to get through the meeting.

they asked mum how she felt about dads progress and future care, and altho we had a long chat on saturday about what she would and wouldnt like to happen she clammed up and answered - i dont know -

i was so pleased i was there and could be her voice. i expressed my concerns for dads safety in regard to the set up of the house ie a huge window at bottom of the stairs...many steps outside of the house plus a main rd at the end of their rd.

i also expressed concern that he hadnt be prescribed and medication for the parkingsons, altho i also made them aware that i know that medication for parkingsons can make the lewy body symptoms worse, and vice versa.....

they now have a parkingsons specialist coming to see dad tomorrow or monday.

with the help of the CM they are keeping dad for further assessments

the lady dr also agreed that the last 17 weeks rapid decline altho typical of lewy body, is indeed speedy and unfortunatly the decline will continue to be rapid.

the nurses on the ward are fantastic, very caring and considerate, dad is always clean and tidy and in fresh clothes as well as being freshly shaven, this helps mum to accept what is happening knowing he is being cared for well

anyway he is now having difficulty remembering how to eat.....use the toilet.....he is making lots of hand actions as tho he is doing something altho what we dont know..

he is in his own reality

thank you again for your support

love Jane xx

 

[Sheila]

Dear Jane, your Mum is indeed lucky to have you there for them at this time. I am glad the meeting has proved productive and that you voiced the worries for your Mum. It is so sad to hear of this rapid decline in your Dad, I do hope the specialist tomorrow will be able to help. Thinking of you, love She. XX

 

[Norman]

Hi Jane
glad that you got such a good result,great that were able to speak up for your mum.
What always worries me is how do the poor souls without anyone to support them manage?
Norman

 

[Sheila]

Yes Norm, that worries me too. The patients liason support worker (PALS) can arrange to accompany anyone who needs support according to their leaflets. They can now be found in most hospitals. Any one needing them should ask at reception or look on the notice boards for more information and a contact number for their local representatives. Love She. XX

 

[noodle31]

Hi Norm and She

Yes this is a worry i have...

working in mental health the majority of our clients have no one to speak for them, which is where we come into play.

There are voluntary advocacy workers which we as staff can introduce.

BUT people like my mum, well they wouldnt ask for help. i know my mum wouldnt.

so what about them? the people stuck at home muddling through, not asking for help and not being offered it either, altho again even if help is offered it isnt always accepted however desperatly wanted.......

in many situations accepting the help the people feel they have failed or feel guilty, which is why they turn it down

my mum only accepted help finally because she came to a point she knew she couldnt cope......and that is with a supportive family,

it saddens me to think there are many people suffering because of guilt, pride or even ignorance

for me, my support is being able to come on here, so thank you again

love Jane xx